When I was diagnosed with an eating disorder, there was one question I just couldn’t get out of my head: “How did I miss this?”

Coming out of denial has been such a terrifying process. It’s like discovering that I’d fallen asleep at the wheel, and, eyes open now, I’m forced to assess the damage I can’t even remember causing.

One minute, I swear, I was on the road — the next, there are wires attached to my chest, and I’m getting an EKG and wondering how the hell I got there.

The shock comes in waves, and some triggers feel more sensitive than others. My stomach drops every time I hear my dietician say the word “refeeding.” I cringe when a doctor says “starvation.” They feel like heavy words, too grim, and the gravity hasn’t set in for me just yet.

I can’t decide what scares me more — the fact that I’m so malnourished that I have to reintroduce my body to food, as though we’re strangers to one another, or that my fear of food still, at times, outweighs my fear of destroying my own body.

How could I have fallen this far down the rabbit hole and not noticed?

I want to share what I’ve realized about my own denial, not just to get it off my chest, but because I think it speaks to the larger issue of how eating disorders are characterized.

Because as I began to unpack the reasons why I missed the signs, one thing became obvious: It’s not that I missed it.

It’s that our culture never gave me the tools to recognize an eating disorder in the first place.

1. My eating disorder wasn’t as ‘obvious’ as I thought it would be.

My eating disorder didn’t present in what I considered the “typical” way.

I wasn’t obsessively weighing myself, I wasn’t counting every calorie that I consumed, and I hated exercise. I didn’t cry if I ate a slice of pizza or have a deep-seated fear of butter. I didn’t fit the stereotype, which made the denial much easier to cling to.

My relationship to food and my body, though, was still dysfunctional.

Food caused me so much anxiety — the decisions involved, the binary of “good” and “bad” foods, having “too much” of something and “too little” of something else, and all the pressure of making the “right” choice.

Even with all of that anxiety, I pointed to the fact that I wasn’t trying to lose weight as “proof” I didn’t have an ED. I just wanted to stay exactly the same — which I insisted wasn’t about my body image or a fear of fat.

If I was always just a little hungry, I reasoned, I could prevent my body from ever changing. No one told me that an obsession with size, even if it’s not about getting smaller, is still an obsession rooted in a fear of fat.

Basic things like cooking or even looking in the pantry could send me spiraling. That anxiety led to cycles of restricting, in which I would eat very little, just to avoid the obsessive, overwhelming thoughts that emerged each and every time I had to make a decision around food.

It escalated, too, to the point of being unable to feed my own cats, for fear of making the “wrong choice” for them.

My partner is still solely responsible for determining what our cats eat and giving them food, because the panic I felt about their diets became too unmanageable for me.

My eating disorder also wasn’t as static as I expected. I had periods of time that I ate more, but as my life stressors increased, my restricting did, too. I thought eating disorders had to be constant and consistent, and mine wasn’t. I figured that let me off the hook, because it was “just stress.”

All of this is still dysfunctional, but in my mind, I could only picture the stereotypes that I had heard. I could eat pizza and ice cream! I could eat takeout! I wasn’t vomiting!

I was quick to point to the things that normalized my behavior, but eager to deny the things that were clearly disordered.

2. My body didn’t ‘look’ sick.

The one thing that still boggles my mind about eating disorders is that they truly have a mind of their own.

I knew, logically, that eating disorders can impact anyone of any body size. But I still denied having a problem, because the body that I saw in the mirror didn’t look emaciated.

Where was my terrifying “before” picture? And even if I tried to get help, who would believe me if I wasn’t “thin enough”?

But eating disorders don’t describe a type of body — they describe a specific relationship to food and to our bodies that causes psychological distress.

It took a long time before I was willing to accept that my body didn’t reflect whether or not I had an eating disorder; my state of mind did.

3. Everyone around me had disordered eating.

Disordered eating is everywhere. Skipping meals, weight loss resolutions, detoxes and fasts, even smoothies that replace meals are totally ubiquitous and, at times, inescapable.

When you’re immersed in diet culture, recognizing that you have an eating disorder can be impossible when everyone around you is validating your mentality, however unintentionally.

Being transgender especially, it’s normal for people to struggle with their bodies, and to push themselves to change as quickly as possible, no matter what it takes. And while gender dysphoria is a very serious struggle, I often used mine as an excuse to dig deeper into my eating disorder.

“It’s not an eating disorder,” I’d tell myself. “It’s just dysphoria.” But these aren’t mutually exclusive — in fact, this is why transgender people are at such an extraordinarily high risk for eating disorders.

How could I know that what was happening to me was dangerous if everywhere I looked, it was presented to me as normal and even desirable behavior?

4. My justifications for restricting seemed totally reasonable.

My eating disorder was really good at pointing fingers. For every disordered behavior or thought I had, I could always come up with a hundred excuses for why I engaged with food that way.

I went vegan for ethical reasons. I just hate cooking, okay? The kitchen is too messy. I’m saving money by skipping lunch. I don’t really have any food in the house. I’m a picky eater. I’m just lazy. I’m not good at meal planning. I’ve been so busy. I’m just saving room for dessert. I just prefer snacking throughout the day. I don’t need that. That doesn’t have vegetables. I’ll eat later.

I think a lot of people imagine that an eating disorder is a deliberate and conscious decision like a structured diet that spun out of control, but in reality, it’s a lot sneakier for many of us with EDs.

I didn’t wake up one morning and decide that I was going to stop eating. Rather, these little excuses that popped into my head enabled my restricting one meal at a time. And before I knew it? I had a much bigger problem.

My eating disorder wore down my defenses a little bit at a time — look how much creamer I put in my coffee! That’s practically breakfast! — which allowed it to escalate in an insidious, practically unrecognizable way.

It wasn’t until I was sitting in the doctor’s office, trying to explain what I was eating on a typical day (“Trail mix,” I explained, “and then I eat ice cream if I think I might faint”), that it finally hit me that I’d been duped.

5. It became my ‘new normal.’

Eating disorders are built on a house of lies, but if it’s the only house you’ve ever lived in, you just won’t see it that way.

One of the things that’s been most jarring about eating disorder recovery is realizing how skewed and even broken my barometer was around food.

I don’t remember what it’s like to feel “full” because I’ve spent so long being hungry. Things that I considered “a lot of food” turned out to be very little food to everyone else. I didn’t understand the difference between a meal and a snack.

I was convinced that hunger wasn’t a prompt that our bodies give us to eat, but rather, something that I had to fight to suppress by calculating the minimal amount of food I would need to manage. In other words, to me, hunger wasn’t natural — it was an ailment or a problem to “fix.”

When you have a relationship like this to food and to your body for a long time, it becomes the only reality that you know.

It’s like when my dietician asked me to have a nutritional shake and trail mix for breakfast, and I blurted out, “In the same sitting?” Hearing myself say that made me realize that, all along, I’d constructed rules that were strictly define by my fears, rather than the reality of what my body needed.

Recovery, for me, has been about completely dismantling that house of lies. It’s learning to be skeptical of everything you believed to be normal, and rather than allowing your eating disorder to dictate what “normal” is, it’s letting your body guide you to create an entirely new paradigm.

That paradigm is one that doesn’t react to hunger from a place of fear and trauma (fight or flight), but rather, from a place of body trust.

6. Having an eating disorder didn’t feel the way I thought it would.

I genuinely believed that if I had an eating disorder, I would have felt miserable all the time.

I was supposed to be angry, volatile, depressed! Instead, even in the midst of my disorder, I didn’t have the extreme despair that I assumed would accompany something as serious as an eating disorder.

But the reality is, eating disorders don’t always co-occur with a mood disorder. Mine didn’t — I have obsessive-compulsive disorder, not depression.

So if you’re expecting yourself to be constantly depressed? That may not be how EDs show up for you specifically.

You might actually feel “fine” — but it doesn’t mean that you are.

Mood swings can be part of it (and I certainly had my fair share), but some of us are more likely to experience emotional numbness, anxiety, irritability, restlessness, or even euphoria, rather than depression.

There is so much happening chemically in the midst of an eating disorder, it can be hard to predict how our emotions will respond, except to say that they can be super unpredictable.

Eating disorders are coping mechanisms, and as such, there really is no way you are “supposed” to feel in order for your eating disorder to be valid.

Truthfully, I felt the most depressed and despondent in recovery, when I first tried to start eating again. When I had to actually sit with my fear and discomfort instead of restricting, that’s when my mood absolutely crashed.

The misery that I felt when I started in recovery made it even harder to believe I had a problem, too. I kept thinking, “If this is treatment, shouldn’t it be making things better?”

But I promise you, that’s normal! Sometimes it does get worse before it gets better — and that’s just part of the process.

7. I thought I ‘knew better.’

I wrote about this in my last blog but it bears repeating: Anyone, even mental health advocates who write about this shit for a living, can have an eating disorder.

One of my gorgeous friends in recovery said to me recently, “Sam, you’re talking about eating disorders as though they aren’t mental illnesses.”

And that was the crux of the issue, really — I believed that if I had the right attitude, the right meal plan, or shared enough body positive Instagram posts, I could worm my way out of having an eating disorder.

But eating disorders are mental illnesses and they have to be treated as such. Reading a book or taking a selfie in a crop top can be empowering, and it can open the door to recovery, but eating disorders require more than positive thinking.

I needed help.

Eating disorders are so much bigger than an attitude adjustment. It’s asking you to create an entirely new relationship to your body, to your food, and to the world around you. That is a lifelong process — but a worthwhile one, too.

I’ve had an eating disorder most of my life, and yet it was unrecognizable to me.

And I can’t help but feel that, in a culture that was simply more informed about what eating disorders are and the diverse ways they show up, we’d all be much quicker to recognize them in ourselves and our loved ones.

That’s ultimately why I’m sharing my experiences so openly. I want each one of us to be able to embrace recovery, knowing that our struggles are valid regardless of how they compare to anyone else’s.

Please know: If you’re struggling with food for any reason — if it scares you, makes you angry, overwhelms you, whatever it is — there’s no harm in reaching out and talking to someone.

I’d recommend getting in touch with the National Eating Disorder Association, where you can chat with folks who are the experts in recognizing these complex disorders.

You deserve whatever support and affirmation you need to have a safe relationship with your body and with food.

And I hope that someday, we’ll live in a world where those relationships are modeled for us, so that we never have to question what that looks like.

Want more real talk about recovery?

The conversation continues over on Patreon, where I film weekly videos talking about mental health, recovery, self-care, and more. This week’s video dives deeper into how social media can perpetuate denial in recovery — go check it out!

Photo by Toa Heftiba on Unsplash.